I remember years ago being given a Lyme Symptom Checklist. It had a mishmash of things from ringing ears and arthritis to fatigue and Bell’s Palsy. One that stuck out was (and they were written in first-person sentences, IE: “I experience joint pain” and “I have trouble waking up in the morning”): “I feel like, in terms of my health, ‘there’s always something.'”
For the bulk of the past few years, my symptoms were unpredictable but not unpredictable. Paradoxical? Nahhh. Not really. I wasn’t surprised to have nerve pain and fatigue. Migrating arthritis did not surprise me. The randomness of my symptoms were unpredictable, the timing of my symptoms were unpredictable, but there was something familiar about the symptoms and sometimes the pairing of symptoms.
Now? There seem to be surprises again.
Today I feel just like I did when I was on huge courses of antibiotics — the bloating and fatigue and diarrhea. If I eat something or even drink something, it’s like ingesting a locomotive on full steam headed downward: a heavy, fast, unstoppable descent. It’s been more than a year since I’ve had antibiotics and that was for strep throat (and I herxed in the Lyme way).
Yesterday I went to the hospital with crushing pains in my abdomen. The pain was more of a constant discomfort when I was still, but when I walked? It was pretty epic. At work I finally cried uncle when the pain nearly pushed me to fainting when I peed. My supervisor drove me to the E.R.
I learned something in the E.R. They didn’t do much to rush me in to a bed. People came in after me and left before I was even taken into the back. Yep! Brought in, treated, discharged. I sat there for 2 hours. They IMMEDIATELY had me pee in a cup and put it in a raging red ziploc baggie that said “STAT” on it.
During my stint in the waiting room, I reflected on my demeanor when I spoke with the triage nurse. I had been very calm. She asked about the numerical value of my pain. I gave the idle time a “three,” adding that it was a bit more than a dull pain. I informed her that when urinating at work it was a “nine.” My demeanor did not change. I described this in a matter of fact way. She looked at me for a long time like she was trying to figure out what to make of this proclamation made in an everyday tone. This didn’t occur to me until I saw other people in the E.R. People crying and clutching themselves. People who spoke frantically to the triage nurse. By comparison, I must have looked comparably OK.
I must say that after having experienced bouts of nerve pain over the past few years — pain so severe it’s altered my heartbeat, pain so severe I’ve vomited, pain so intense it was too intense to yell or swear or even say “ow”…. just the “sit and stare” kind of pain …… a pain that is rather fascinating — my sense of urgency with pain may have been dulled. Maybe the nerve pain has expanded my threshold for pain. How do I tell people this? Is there a card I can carry in my wallet to present to triage nurses so that they understand that although I’m not screaming and crying that I honestly, truly, genuinely HAVE experienced pain best described as acute?
When my boyfriend came down and I explained to him the pain, I thought he gave me a funny look. It may have been nothing. It may have been something. I explained to him that it was June 28th and that the fiscal year changes in four days, that I’m spending $500 of a deductible on this pain and that hopefully that’s a testament to the caliber of pain I’m in. He nodded, eyes widened slightly. I thought about this, too, and how people close to me don’t really know how to gauge the caliber of pain I’m in. They trust me, yes. I’m not a liar. But I think because I simply state things and don’t have a barometer on my forehead, it’s hard to interpret.
When I was first going through the diagnosis process in 2008, my mother came with me when I changed doctors. She had to serve as my interpreter. I told the doctor matter-of-factly, “My knees hurt. It’s hard to walk.” She went on to describe that I tend to understate things and “Becki is crippled by this on some days.” The doctor looked at her and hesitated. She then rolled up my jeans and was surprised at how swollen my knees were. I knew then that I had possibly been shooting myself in the foot with the other doctors with my matter-of-fact tone. But … I’m not an actress. I can’t go in there in good conscience howling and wailing when I am very capable of calmly telling them what I’m experiencing with the expectation that they take my word.
Finally I was brought to a room. I had the johnny on and had merely sat on the stretcher when a nurse appeared with a computer cart and a bunch of vials. She kicked at a lever beneath the bed, elevating me in rapid jolts and jerks. That hurt my belly. I winced. “Does that hurt?” She asked. I nodded, saying “yeah,” calmly and slowly. “Did the ride over hurt?” She asked. It hadn’t so much. My supervisor’s car is a fairly smoothly idling car and he’s not the type to drive fast and stop short. “Nah?” I said, a question mark in there because it was hard to think clearly with the pain angrily stamping my belly with exclamation points.
She slapped my arm and tied it off, briskly removing the tourniquet and tying it to the other arm and slapping my veins. She returned to the other side and impaled me. I felt it being maneuvered under my skin, sitting there patiently with eyes fixed on the bed linens. She moved to the other arm and had some red-flowing success. She apologized for the many attempts, but I praised her for doing so well. So many others before her have had to go get someone else. Others before her have had to use the veins in my hands. They took me seriously. I obediently drank the two bottles of contrast over 2 hours like they said. My honey kidded around with me about things and made me laugh. I pressed hard on the circle of pain in my lower right abdomen, squealing at him “DON’T make me LAUGH!”
They did a CAT scan.
In a pretty short period of time, the doctor told me my appendix is fine and he asked if I had had a sore throat. I told him no. He asked about my menstrual cycle. I told him it had been 2-3 weeks. He mentioned a condition called “Mittleschmertz.” The doctor stated that it is pain in the middle of the menstrual cycle. He smiled benignly and said it IS an actual term. Then he mentioned that I have a cyst on one of my ovaries and that perhaps ovulating aggravated it, but that it’s not big enough to cause me pain at this point. Presently his cell phone was ringing and vibrating, so he excused himself and disappeared beyond my muted yellow curtain with the satin-textured pattern of leaves. I stared stupidly at the swinging fabric. That’s IT?
The nurse came in to tell me I was free to go and gave me a prescription for Motrin and Vicodin for the pain. I’m a recovering alcoholic. I’m not taking Vicodin. Not for this. Vicodin doesn’t help my nerve pain and if I could survive that, then I can survive anything. I asked her what all the blood samples were about. Her eyes narrowed, “Hmmmm….. I’ll go find out.”
When she reappeared she informed me that my enzymes were perfect — nothing even a little elevated — and that they had tested me for my liver, kidneys, appendix, bladder & gall bladder …. I’m okay. Having a friend who is dying from ovarian cancer, I asked about the cyst. They had seen it on the CAT scan …. what do they see?
Is it some grainy image that leads them to ASSUME it is a cyst? Or is it a full color, coffee table book quality photograph with a high gloss finish?
I withheld notes of fear in my voice, but I felt sick when he mentioned the cyst. She told me with reassuring conviction that they are almost always benign and nothing to worry about. “You can follow up with your O.B.’ if you want,” she offered.
Today I am home with diarrhea. This may be TMI, but what is being produced is not much digested. And it’s frequent and urgent and anything I drink seems to go through the bowel in rapid fire spurts. Mittelschmertz, my ass.
That afternoon in the E.R. wasn’t for nothing, though. I did learn more about the way I communicate and could almost see it from the outside. I did learn that there are some very serious conditions I don’t want and thankfully don’t have (in fact, the ugly C word preyed on my mind on that stretcher while I sipped the fruit flavored contrast …. and if it weren’t for the fact that I’m ballooning instead of deflating, I might have let it prey longer). Yeah. There’s Always’s Something — whether it’s symptoms, learning experiences, or enlightenment.